AFTER RECEIVING A PRENATAL DIAGNOSIS OF A LIFE-LIMITING CONDITION, YOU WILL BE NAVIGATING INFORMATION, DECISIONS, GRIEF, AND THE INEVITABLE EXPERIENCE OF TELLING YOUR FAMILY AND FRIENDS ABOUT THE DIAGNOSIS AND PROGNOSIS. THE IDEA OF SHARING THIS NEWS AND DEVASTATING REALITY WITH YOUR NETWORK OF FAMILY AND FRIENDS MAY SEEM DAUNTING, AND YOU MAY NOT FEEL FULLY EMOTIONALLY PREPARED FOR THE PROCESS.
First and foremost, you are in control of this part of the carrying to term process. How and when you tell your family and friends about the diagnosis and prognosis for your baby is entirely up to you and your significant other. There truly is no right or wrong time to share this news with your network of relationships. There are no specific or right words to convey this news, explain the future, and ask for support.
I wish I could provide you with a script to make this part of the process easier or more clear cut for you. No such script exists; however, I can provide you with guidance to help you navigate this experience well following the diagnosis and throughout each step of the process.
Before you tell your friends and family, you and your significant other should sit down and assess your needs, consider your preferences, and establish boundaries. Once you two have established your needs, preferences, and boundaries, your next step is to inform your family and friends. After you inform your network of support, consider equipping them with the resources necessary to care for your family well. Finally, you and your significant other should work together to craft a plan for on-going communication and set expectations for that communication and support moving forward.
“First and foremost, you are in control of this part of the carrying to term process. How and when you tell your family and friends about the diagnosis and prognosis for your baby is entirely up to you and your significant other.”
ASSESS YOUR NEEDS AND CONSIDER YOUR PREFERENCES
You are your own best advocate. Before you and your significant other begin to inform your network of family and friends about the diagnosis and prognosis, I encourage you to take some time to process the news on your own. You will have received so much information, and you will be navigating a range of emotions and grief following the diagnosis. By providing yourselves space before inviting others into this experience, you allow the two of you to research, process, and begin to talk about the best next steps for your family. Once you have had some time to think, it is important that you then assess and openly communicate your needs and preferences regarding informing- and communicating with- your family and friends.
Here are some questions to consider and discuss before you share the news with your network of support:
- When do you want to tell people?
- How much information do you want to provide?
- Is there anything you are not ready or do not want to tell your family and friends?
- What kind of support do you need and/or want from your network of support?
- Is there any type of support that you do not want?
- Do you want to inform people via direct or indirect contact?
- Direct contact looks like telling someone in-person or through one-on-one contact like a phone call to an individual.
- Pros: It is more personal in nature, and it allows for clearer and more specific communication.
- Cons: It is more personal in nature and can allow for emotional responses that could potentially be triggering to you. This can inadvertently put you in the position of supporting or caring for your network of support or answering questions you are not ready to address.
- Indirect contact looks like text messages, email, social media, or the use of a designated person to share the news. It is any contact that puts a bit of distance between you and the person you are informing.
- Pros: It provides space for your family members and friends to process on their own before responding. This shelters you from their immediate reactions and potentially unfiltered responses.
- Cons: It is less personal in nature, and it can feel isolating to you and the person receiving the news. It may also inadvertently create distance between you and them, and it may create anxiety about offering or receiving support.
- Direct contact looks like telling someone in-person or through one-on-one contact like a phone call to an individual.
- How do you envision telling your family and friends? What feels the safest, easiest, and most supportive way to inform your family and friends?
- Here are some options:
- Hold a family meeting to tell those closest to you about the diagnosis in person at one time.
- Invite your parents, a few of your closest family members, or the people who will be walking with you through this to meet with you and your social worker, care coordinator, or doctor to help you explain the news.
- Divide and conquer. You tell your family, and let your significant other tell their family.
- Appoint a trusted family member or friend to spread the news for you.
- Utilize a social media platform to share the news.
- Send out a mass email or text (with the full permission to then turn your phone off or on silent for a while) to your network.
- Here are some options:
There is no right way to navigate this experience. The only right path is the one that feels the healthiest, safest, easiest, and most supportive to you and your significant other. Your emotional and mental health are the priority as you enter into this process. While the support of your network of relationships is important and helpful for you throughout pregnancy continuation, you do not owe anyone any information, and you are not responsible for their responses or their feelings. As you plan for telling your network of support, start by prioritizing your needs and preferences and that of your significant other. Then, work together to establish the appropriate boundaries for support and communication moving forward.
A boundary is a line that marks the limits of an area. It is a dividing line. When applied to relationships, boundaries become a personal limit to the relationship and the sphere of activity in which the relationship operates. In other words, personal and relational boundaries are the limits a person puts in place to ensure that they are treated well, and these boundaries also serve as guidelines to help the person navigate their response when someone pushes against those limits. Personal boundaries are interpersonal, as they limit both the incoming and outgoing interactions between two people.
Boundaries can be physical, mental, emotional, social, and/or spiritual, and their purpose is to prioritize your needs, protect your well-being, and provide space for self-care. Boundaries do not have to be rigid, fixed, or unchanging. Healthy boundaries can be flexible- dependent on the situation and relationship- and subject to change throughout pregnancy continuation. Boundaries can be rigid and unchanging, as needed, depending on the relationship dynamic.
The steps for establishing healthy boundaries are:
- Consider the relationship in question and what you need from it.
- Consider the boundaries already in place for that relationship and think through any necessary boundary adjustments.
- Create healthy boundaries for each step of the carrying to term process.
- Communicate these boundaries clearly, calmly, and sensitively with your network of support.
Following diagnosis and then throughout pregnancy continuation and the bereavement periods, healthy boundaries can look like:
- Discernment about the information given
- Time limits on visits and phone calls
- Guidelines and expectations around questions and communication
- Utilizing a point person or another means of indirect contact to keep your network informed
- Asking for specific help
- Not being responsible for supporting the emotions of your family and friends
- Loosely committing to social events, with the freedom to cancel if needed
- Saying no to social events, requests, or anything else that does not feel like self-care in this season
- Turning your phone off or putting it on silent for periods of time throughout the day
- Limitations placed on social media
You have limited resources right now- physically, mentally, emotionally, socially, and spiritually- so you have the right to say no or express your needs and preferences without explanation or apology. You have the right to take care of yourself, and boundaries help you do just that.
Establishing and enforcing healthy boundaries allows you to put your needs and that of your significant other and your child or children first. These boundaries provide you with the space and energy to make the decisions that are the best for your family. They also help protect the limited time you have with your baby. Boundaries are a form of self-advocacy, and it is both helpful and important that you work to identify and establish the boundaries that you and your family need before sharing the news of the diagnosis and inviting your network of support into this process.
“Establishing and enforcing healthy boundaries allows you to put your needs and that of your significant other and your child or children first. These boundaries provide you with the space and energy to make the decisions that are the best for your family. They also help protect the limited time you have with your baby.”
INFORM YOUR FAMILY AND FRIENDS
After you and your significant other have spent time identifying your needs, considering your preferences, and creating boundaries, you are prepared to tell your family and friends about the diagnosis, whenever you are ready to do so. There is no timeline, and there are no rules when it comes to choosing when, where, and how you let your network of family and friends know about your baby’s diagnosis and prognosis. You may find that, even after all your preparation, you just do not feel ready at this point in the process. This is a normal reaction because it may feel as though keeping the news to yourself means that it is somehow not real- as if it is all just a bad dream- or you may worry about what it means to share the news.
While you are in full control and get to make this decision entirely for you and your significant other, I encourage you to lean into the discomfort, the anxiety, and even the unknown that comes with sharing such hard news with the those in your life. Sharing this news is the beginning of sharing your story. When you put words to what is happening and invite people into this experience as support for you, you are advocating for yourself. You are practicing self-care by allowing others to walk this path with you and help support you emotionally, mentally, physically, socially, and spiritually.
Fundamentally, you need all the support you can get throughout this process. This experience is hard enough as it is, and if you have people that you trust around you that want to enter in, offer support and tangible help, or simply be there to listen to you as you process, lean in. Let them know about the diagnosis, and let them support you. You do not have to navigate this experience alone.
If you are wrestling with the idea of sharing the news, I want to remind you that you are in control. You get to control the narrative. You get to choose what information you share or do not share. You get to set the tone of the experience by sharing your own emotions. You get to paint the picture of what this process is like and will be like each step of the way. This is your experience, and though I know it is not one you would have chosen, and it may feel like you are entirely out of control, you do get to control this experience of telling your network of support. You get to share your story on your terms.
As you navigate sharing the news, let me just encourage you. There are no right or wrong words. There can never be too much or too little information. It is okay to be emotional when you share the news. It is okay to be numb or stoic when you share the news. It is okay to not know the answers to their questions. It is okay to say that you just do not have the emotional bandwidth to answer their questions right now.
When you are ready, I encourage you to start with the people in your life that you trust and feel the safest with and most supported by. These are the compassionate people, the people who know you the best, or the people you regularly go to with your heartbreaks and your joy. These are the people who you know you can count on to be there in the hardest of hard situations. Start with them, share the news, and then share the news with the rest of your network of family and friends.
“As you navigate sharing the news, let me just encourage you. There are no right or wrong words. There can never be too much or too little information. It is okay to be emotional when you share the news. It is okay to be numb or stoic when you share the news. It is okay to not know the answers to their questions. It is okay to say that you just do not have the emotional bandwidth to answer their questions right now.”
While so much of this experience is wholly dependent on the unique and personal relationships you have with the people in your life, there are some practical tips and reminders I can provide to you as you navigate informing your family and friends:
- Use clear, direct statements- with as much information as you choose- about the diagnosis and prognosis.
- Use the diagnosis language, if you feel comfortable, so that your friends and family members can do their own research and find answers to their questions.
- Communicate and enforce your clear personal boundaries.
- Let your network know that you will respond to texts, answer questions, or share information when you are ready.
- Direct your friends and family members to Carrying To Term for resources specifically designed to help them care well for you.
- Remember that you are not responsible for how your family and friends receive and cope with the news.
- You can end the conversation at any point that you need to.
- You do not have to be the one to share the news.
If you are a parent to older children- your baby’s big brother(s) and/or sister(s), you will also be navigating the experience of telling your children about their sibling’s diagnosis. Children’s grief is a unique experience, and it can be difficult for parents to navigate their children’s grief while also processing their own emotions. To help you tell your children about their baby sibling’s diagnosis and walk with them in their grief, please read our post about children’s grief, found here.
EQUIP YOUR FAMILY AND FRIENDS
Equipping your family and friends with tools, education, and on-going support may seem like a daunting task. You already have so much on your plate to navigate, but this is an important and helpful step to ensure that you family and friends are able to support, care well, and navigate this experience with you in ways that feel healthy and safe for you.
Equipping your family and friends can help your network know what to do next. It can help them communicate with you well. It can help them seek support for their own emotional needs. It can help protect you from what may, at times, feel like an overwhelming amount of expectations or demands placed on you for information, insight into your feelings, how you are coping, or tips to help care for you well.
First and foremost, your responsibility is to care well for you, your baby, your significant other, and any children you may have. Carrying To Term prioritizes your self-care, so we have done the heavy-lifting for you when it comes to supporting and equipping your family and friends.
When you are ready to provide resources to your family and friends, we recommend that you direct your network to our website (carryingtoterm.org). There they will find:
- A series of videos to help them understand what it means to receive a prenatal diagnosis and choose pregnancy continuation
- Stories from parents who walked this path to help them understand the experiences you are facing, the grief you feel, and the beauty in your story
- An entire section of our blog dedicated to encouraging, educating, and equipping friends and relatives throughout the process of caring for a carrying to term family
On our blog, we have several posts that we recommend parents share with their network of support after sharing the news of the diagnosis. These resources were written to help your network of support understand the unique challenges, emotions, and experiences you, the parents, are facing. We want your family and friends to feel confident in their abilities to empathize, communicate well, and provide the tangible support you need each step of the way. To equip your network, we recommend sharing the following blogs:
- For Friends and Relatives: Communicating With Parents
- How to Support Parents
- Giving Gifts and Keepsakes to Parents
- Respecting Delivery Day
To help your network of support further understand your experience, we find that the following posts written for parents can shed light on these topics for friends and relatives as well:
If you are navigating this experience while also working, we provide a resource to employers to help them care well for their employees throughout the entirety of the pregnancy and during the postpartum and bereavement periods. You can find our blog for employers here.
“Equipping your family and friends with tools, education, and on-going support may seem like a daunting task. You already have so much on your plate to navigate, but this is an important and helpful step to ensure that you family and friends are able to support, care well, and navigate this experience with you in ways that feel healthy and safe for you.”
PLAN FOR ON-GOING COMMUNICATION AND SET EXPECTATIONS
Once you have informed and equipped your network of family and friends, I encourage you to think through your needs and preferences for on-going communication throughout the pregnancy, during labor and delivery, and in the postpartum and bereavement periods. As the parents navigating this experience, it is entirely up to you how much information you want to share, how often you want to share it, and through which methods you want to share it.
You will likely be on the receiving end of well-meaning questions, advice, and contact at each step of the way. This support can be incredibly helpful and supportive as you make decisions and memories. Sharing this experience with your network of support can be a means of memorializing this experience and making it feel real and impactful. However, sharing this experience can also feel overwhelming to some parents. Deciding how involved you and your significant other want those around you to be is important and at your discretion.
There are a few tools to help you update your community regularly that do not monopolize your time:
- Journal websites like caringbridge.com
- Sites like this allow you to save time and reduce stress by creating a space for you to share news and updates with your entire network at one time. You can create a private site that prioritizes and protects your privacy and still allows you to ask for help, receive emotional support, and update everyone in a less overwhelming and consuming way.
- Social Media
- Social media is a helpful way to stay connected to family and friends throughout this experience. Many parents find that posting updates to their social media channels is a way for them to update their community without feeling overwhelmed. Some parents even create pages or private groups to allow for updates in a more focused and private way than just on their main feed.
- Appoint an outreach person
- Again, appointing a trusted friend or family member (or a few) to update a designated set of people within your network of support is a helpful tool to take the burden of providing information off of parents. When you have updates, you can text, call, or email your point person and then have them share the information you choose with your network of support. This can also be a helpful way for parents to sort through, filter, and answer their network of support’s questions since the questions would come through your outreach person before coming to you.
When you settle on your method of on-going communication, whether it be the indirect suggestions above or through direct and more personal contact, be sure to clearly share your decision and set expectations with your network. Let them know that you will be updating them regularly, when you are ready, and that you will do your best to respond to texts, calls, emails, or any other contact. Let them know that you see and appreciate their efforts to love you well. Share with them that while you appreciate everything, you may not be able to maintain the kind of communication during this season that you would have been capable of before.
The number one thing I hear from the family and friends of parents who receive a prenatal diagnosis of a life-limiting condition is that they just do not know what to do or say, and they do not want to overstep, upset, or intrude. Your network of support just wants you to know that they love you, they care about what is happening to you, and they want to do whatever they can to support and help you. When you set clear expectations for them about your emotional bandwidth, communication limitations, and needs, you are letting them know that they are needed, that you are grateful for their help, and that you do want them to continue reaching out and offering their support.
Sharing the news of a prenatal diagnosis of a life-limiting condition is not an easy process. You are sharing something so personal, devastating, and scary with the people you live life with every day. I encourage you to share the news, when you are ready, because you do not have to walk through this experience alone. There are people who want to enter in and support you well each step of the way.
There is no right way to share this news, and these guidelines are meant to be a helpful set of tools and insight into this process. Please utilize whatever information feels helpful, supportive, and right for your family.
As you prepare to share the news, it is helpful to have an understanding of your and your family’s needs, preferences and boundaries when it comes to communicating and interacting with family and friends throughout this process. Once you have considered your needs, preferences, and boundaries, share the news and equip your family and friends to support you well. Finally, think through, create, and communicate your plan for on-going communication and support throughout the pregnancy and postpartum and bereavement periods.